Monthly Archive: August 2016

Today has been a quiet day. Kayleigh only had PT this morning Nd a single blood draw. That k you Jesus the draw was quick and easy, the IV cooperated! She has one more draw in the morning and then that IV gets to come out. Woo hoo! I see some swimming in our future!

Overall Kayleigh felt well today. She had no chemo today but tomorrow will take the same one she took Wednesday and add another one as well. Please be praying that she tolerates bot medicines well. While they tell us the side effects are mild they are still possibilities. Please pray with us that Kayleigh’s body handles them well, that they go after this tumor and shrink it, and that she feels great while it is working.

Please also pray for a pesky cough that has shown up. I will be asking the doctor about it tomorrow but I would appreciate you all praying that it stops on its own! Tim is also battling sinus crud and I have a little bit of a sore throat tonight. All things that make us a little nervous about being around Kayleigh.

Happy Anniversary to my other half! It seems this year our theme for big events is to mark it with a large Kayleigh life event. On Kayleigh’s 7th birthday we received her DIPG diagnosis. Now today on our 14th wedding anniversary Kayleigh started chemo. All I can say about that is I can at least remember the important dates!

I am so happy to report that Kayleigh had a wonderful day! No headaches, and no side effects from the medicine either! She took that big pill like a boss at 9:11 this morning and didn’t slow down at all. We had multiple blood draws all day long. Those were a little touchy, the IV would flush fine but when the nurses tries to draw back to actually take blood it just didn’t want to work. Thankfully, every time we prayed over that line and every time the nurse would get it. God is just so good!

Tomorrow she does not get chemo, just another blood draw to see how things are. Then, as long as all is well, she will take both chemo drugs daily beginning on Friday to continue for as long as they work. Please Jesus, let these drugs work! We are asking for Him to grant us exceeding abundantly more than we can ask on this point. We are asking for a God sized miracle!

In between her last blood draws Kayleigh was able to catch up with Anna. It makes her so happy to have a friend here! A friend that get just how crappy all of this is but knows that sometimes you just have to power through. I’ve got to tell you, these kids at St. Jude are amazing. They are fighters to the core. Strong doesn’t even begin to describe them.

So tonight our requests are
1.) Complete healing this side of heaven
2.) No headaches and no side effects from the drugs.
3.) For her breathing to continue to be deep and that her body will process the CO2 well.
4.) For God to just keep on showing up in the everyday things.

Tonight’s verse is for my wonderful husband. I am so thankful to have him as my steady partner in all of this. He is about as opposite from me as they come – which makes him a perfect fit. God help him, he has the job of balancing out all my crazy. I love you Tim McClendon – I wouldn’t want to be on this path with anyone but you.

2 Corinthians 6:14
Do not be unequally yoked with unbelievers. For what partnership has righteousness with lawlessness? Or what fellowship has light with darkness?

Today has been a wonderful day. We have been able to see God at work since this morning. Kayleigh woke up a different child this morning. Her eyes were bright and clear and her attitude was the same. She had and Echo & EKG first thing this morning and enjoyed cutting up with the technician. She had labs where her BP was still 1 point high at 113/80 but it was better than yesterday.

By lunch time we heard the news that it looked like everything was going to work out for her to do the trial. We finished at the hospital by 11:00 so we headed back to the apartment to rest. I cannot tell you how wonderful that was! Rest does so much to restore our bodies and minds. As I was holding Kayleigh during her nap I noticed her abdomen was moving up and down as she breathed. To most people that just a normal thing. But for Kayleigh, the tumor has been causing her issues, tricking her body into breathing too shallow and too fast. She hasn’t been able to get a breath that fills her belly in weeks. At least not without really concentrating. And here, today, as I held her I watched in awe as her tummy rose and fell. Not just now and then but continually. As I sit her typing next to her as she sleeps I can still see the rise and fall. Oh thank you Jesus for your generous blessings. There is no medical change to explain this, only the urgent, persistent prayers of our amazing prayer warriors.

If I stop right here it is a beautiful day. But guess what? God wasn’t done. Just as Kayleigh woke from her nap, my phone rang. It was our clinic asking is we could come right away. Kayleigh’s test had all come back and everything was approved to enroll her in the trail. And not just that, but if we could get there today then she could start tomorrow! Needless to say we headed straight over and signed the paperwork. Oh, and while we were there Dr. R took her blood pressure one more time. It was 110/72!!!!!!!

I know there are still so many hurdles in front of us for Kayleigh’s healing, but when I look at today I am counting this day as a glorious win! You know, I chose yesterday to not be disappointed in how God answered my prayers for “something good.” I chose to be thankful for those beautiful small things. I did not go to sleep asking for more good things, I went to sleep last night thankful for how God continues to bless us. And then today, we wake up to this. Our gracious Father truly does answer our prayers in ways that completely exceed our puny, human expectations. He tells us to be faithful in the smallest things. Today, He rewarded our faith and my heart just overflows with His amazing goodness.

My request to all of you is please don’t lose your fervor. Don’t think just because we had a good day that we don’t need your prayers any more. As we begin this journey with chemo we most definitely need you all. We need prayers for this medicine to work on Kayleigh’s tumor. For the medicine to shrink it and stabilize the tumor. For no headaches. To be able to wean her down on steroids (if the chemo is working then it will shrink the tumor and steroids are not needed). And for the medicine to not cause any hair loss!

As you can see we have a large prayer request list and we need you now as much as ever. We will begin first thing tomorrow at 8:00 am preparing for the medicine. It will be administered at 9:00 am. Kayleigh will have blood drawn through the day to make sure her body is responding well. Here is the schedule:
9:15 am
10:00 am
11:00 am
1:00 pm
5:00 pm
As you each go through your day please lift us up as we come to mind. We know your are storming heaven on our behalf and we are seeing beautiful fruits from your labor!

Until tomorrow,
‘Carrow💜

Luke 16:10
10 “If you are faithful in little things, you will be faithful in large ones. But if you are dishonest in little things, you won’t be honest with greater responsibilities.

Ephesians 3:20
20 Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.

Keep praying!! Kayleigh is looking and feeling better today. We know the only different between yesterday and today are all of your prayers. Her blood pressure is still one point higher than they would like but they don’t think that is going to cause any problems. Thank you Jesus!

I will update more later but for now just keep on doing what you are doing. You are making a huge difference!

Well, it has been a very busy day. We were under the impression when we came here that Kayleigh enrolling in this trial was a done deal. Just a matter of signing some forms. It seems, however, that it’s not quite that simple.

Kayleigh has a battery of tests to be performed before she is deemed eligible and so far today we have had two red flags pop up. First her blood pressure is a little too high, and second, her CO2 levels are listed in the “critical” range. One of the drugs has the potential to increase blood pressure so she will be monitored closely. As for the CO2 level, her doctor thinks it’s the tumor pushing on nerves tricking the brain into panting instead of taking deep breaths. The only thing that can be done for that is try to get the tumor to shrink and quit pushing on those nerves. Of course that is our goal for the whole thing, get it to shrink, it’s just so hard to figure out how to make it happen.

So, Dr. R thinks our best bet is to get started treating this thing. The only problem is we aren’t 100% sure that Kayleigh is eligible yet! She has 3 more tests tomorrow Echocardiogram, EKG & chest X-ray. They are also going to do a follow up blood draw to check CO2 again and another blood pressure check.

Kayleigh also had a much longer MRI done today. It was almost 1.5 hours long and as always she was a champ. Still and quiet through the whole thing. Oh how I wish I could say the Lord chose miraculous healing but that was not His answer today. Kayleigh’s tumor didn’t show any “vast” changes. It showed more necrosis which really isn’t a good thing – even though it means more dead tumor, it also means more dead stuff taking up valuable space. It’s possible that there has been some progression but there wasn’t enough change to determine that. My prayer for today’s MRI was for “something good”. I didn’t have anything specifically laid on my heart, just the request for some good news. And while all of that wasn’t particularly wonderful news there was some good to be had. First, the tumor had not changed that much. That has been a big concern due to the headaches so that is a very good thing. Also, her ventricles, while slightly larger than last time are actually right now at the “ideal” size. Frankly, when we are talking about Kayleigh, anything medically that can be classified as “ideal” is a wonderful thing!

So, while I wish I was reporting more glorious news, I am reporting some good news. And yes, I could easily look at those small things and back at God and say “Really? That’s all you’re going to give me?” But I am choosing not to respond that way. I am choosing to say “thank you Lord for these small blessings.” I am choosing to trust that His plan for us is perfect. I am choosing to keep my eyes on Him and not what is going on around me. Because HE is where my peace comes from.

Would you please pray with is that if this is indeed the right trial for Kayleigh that the Lord will work out the details? Pray specifically for the headaches to stay away, for her blood pressure to be normal and for the tumor to ease up and allow her to breathe deeply.

Until tomorrow,
‘Carrow💜

Hebrews 12:1-2
12 Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. 2 We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne.